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POST-SEPSIS SYNDROME


WHAT IS POST-SEPSIS SYNDROME?

Post-sepsis syndrome (PSS) is a condition that affects up to 50% of sepsis
survivors. It includes physical and/or psychological long-term effects, such as:

Physical –

 * Difficulty sleeping, either difficulty getting to sleep or staying asleep 
 * Fatigue, lethargy
 * Shortness of breath, difficulty breathing
 * Disabling muscle or joint pain 
 * Swelling in the limbs
 * Repeat infections, particularly in the first few weeks and months following
   the initial bout of sepsis
 * Poor appetite
 * Reduced organ function, eg kidney, liver, heart
 * Hair loss
 * Skin rash

Psychological or emotional –

 * Hallucinations
 * Panic attacks
 * Flashbacks
 * Nightmares
 * Decreased cognitive (mental) functioning
 * Loss of self-esteem
 * Depression
 * Mood swings
 * Difficulty concentrating
 * Memory loss
 * Post-traumatic stress disorder (PTSD)

The risk of having PSS is higher among people admitted to an intensive care unit
(ICU) and for those who have been in the hospital for extended periods of time.
PSS can affect people of any age, but a study from the University of Michigan
Health System, published in 2010 the medical journal JAMA, found that older
severe sepsis survivors were at higher risk for long-term cognitive impairment
and physical problems than others their age who were treated for other
illnesses. Their problems ranged from no longer being able to walk to not being
able to participate in everyday activities, such as bathing, toileting, or
preparing meals. Changes in mental status can range from no longer being able to
perform complicated tasks to not being able to remember everyday things.

The authors wrote, “…60 percent of hospitalizations for severe sepsis were
associated with worsened cognitive and physical function among surviving older
adults. The odds of acquiring moderate to severe cognitive impairment were 3.3
times higher following an episode of sepsis than for other hospitalizations.”

In addition, one in six survivors find they have difficulty remembering things,
concentrating, and making decisions.

Children can also live with lasting issues related to sepsis. About 34% of
pediatric sepsis survivors are not back to pre-sepsis functioning for at least
28 days after their hospitalization. The numbers could actually be higher as
another study that included teachers who evaluated students who had had sepsis.
The researchers found that 44% of the children who had been in septic shock had
cognitive difficulties compared with healthy children. They are also more likely
to have PTSD if they were treated in a pediatric ICU.

Since the risk of infection – and sepsis – is higher after recovery, sepsis
survivors should speak to their healthcare provider about infection prevention,
including necessary vaccinations.


WHAT CAUSES POST-SEPSIS SYNDROME?

For some patients, the cause of their PSS is obvious. Blood clots and poor blood
circulation while they were ill may have caused gangrene, resulting in
amputations of fingers, toes, or limbs. Damage to the lungs can affect
breathing. Another study, published in 2012 in the journal Shock, researchers
found that sepsis survivors may be more vulnerable to developing viral
respiratory (lung) infections.

Other organs may be damaged as well, such as the kidneys or liver.

These lasting physical issues can be explained, but there is more to PSS that
cannot yet be explained, such as the disabling fatigue and chronic pain that
many survivors experience. Others complain of seemingly unrelated problems, like
hair loss that may occur weeks after their discharge from the hospital.


POST-TRAUMATIC STRESS DISORDER

Many sepsis survivors also report symptoms of post-traumatic stress
disorder (PTSD). Researchers have already recognized that ICU stays can trigger
PTSD, which can last for years.



According to a 2013 Johns Hopkins study that looked at PTSD after ICU stays,
people with a history of depression were twice as likely to develop PTSD after
being in an ICU. The researchers also found that patients who had sepsis were
more likely to develop PTSD.

It is important to note that PSS does not happen only in older patients or in
those who were already ill. An editorial published in JAMA in October 2010,
addressed PSS. In “The Lingering Consequences of Sepsis,” the author wrote, “The
new deficits were relatively more severe among patients who were in better
health beforehand, possibly because there was less room for further
deterioration among patients who already had poor physical or cognitive function
prior to the sepsis episode.”

In other words, healthy people may be expected to rebound quickly from such a
serious illness, but they may actually have the opposite experience.


WHAT CAN BE DONE ABOUT POST-SEPSIS SYNDROME?

Doctors and other healthcare professionals must recognize post-sepsis syndrome
among sepsis survivors. This way, patients can be directed to the proper
resources. Resources may include referrals for:

 * Emotional and psychological support (counseling, cognitive behavioral
   therapy, or neuropsychiatric assessment)
 * Physical support such as physical therapy or neurorehabilitation.

No matter how ill someone is after having sepsis, survivor Julie
Osenton describes how most survivors feel: “You never feel safe. Every time some
little thing happens you think, “Do I need to go to the hospital or is this
nothing?”


WHAT IS POST-ICU SYNDROME AND IS IT THE SAME THING AS PSS?

Post-ICU syndrome (PICS) is a recognized problem that can affect patients who
have spent time in an intensive care unit, ICU. It is more likely among patients
who have been sedated or placed on a ventilator. It is not unusual for someone
in an ICU to become delirious – sometimes called ICU delirium. The longer a
patient is in such a unit, the higher the risk of developing delirium or PICS. A
study published in the New England Journal of Medicine found that some of these
patients continued to have cognitive (mental) problems a year after discharge.

The difference between PICS and PSS may seem slight. PICS is ICU related.
Patients who are admitted to the ICU are at risk for PICS. PSS, on the other
hand, can occur in sepsis patients who were not treated in an ICU, but who had
extended hospital stays. The risk increases according to the severity of the
illness and how long the hospitalization. Patients with PSS may also have
physical issues that aren’t usually related to PICS, such as amputations.


ARE POST-COVID SYNDROME AND PSS THE SAME THING?

There have been many articles in the press and online about COVID-19
long-haulers, so named because they experience lasting symptoms long after after
they recovered from the coronavirus infection.

People who have severe COVID-19 have viral sepsis. COVID-19, the infection
caused by the SARS-CoV-2 virus, causes sepsis and results in severe illness.
Therefore, the symptoms associated with post-COVID syndrome are identical to
PSS, except for the loss of taste and smell. However, since sepsis is rarely
mentioned in relation to COVID-19, people have started to call the lasting
issues post-COVID syndrome instead of PSS.

Sepsis Alliance Connect is a virtual support community designed for the millions
of people affected by sepsis. Click here to learn more or to sign up.


PSS LETTERS FOR HEALTHCARE PROFESSIONALS AND OTHERS.

Some people who believe they have signs of PSS might find it difficult to speak
to healthcare professionals about their problems. This letter, addressed to
people who work in the healthcare field, helps explain some of the issues
involved in PSS. If you feel this letter would be helpful, please feel free to
print it out and bring it to your doctor’s appointments.

To help explain post-sepsis issues to others, Sepsis Alliance has letters that
explain sepsis and PSS to:

 * Doctors
 * Teachers
 * Coaches
 * Daycare Workers
 * Employers

Updated July 22, 2024.


DIANA L.

Survivor

It started with a urinary tract infection I did not even know I had. (Sepsis and
Urinary Tract Infections) That weekend, I lost my appetite and was extremely
tired. I went to urgent care the next day, where I was given antibiotics for the
UTI. The day after, I felt worse, and went to the ER, where I was given a blood
transfusion, along with other medications. I was asked if I wanted to admit to
the hospital, and I though the medication would work, so I went home. After 2
days, I woke up one morning and was very ... Read Full Story

Submit Your StoryView More Stories


BRANDON B.

Survivor, Survivor

Shortly after Hurricane Beryl hit Houston, Tx in July 2024, our (23yo) son
diagnosed with Angelman Syndrome, a rare neuro-genetic disease, began to exhibit
signs of illness. When someone you love is unable to communicate it’s one of the
most difficult challenges you face as a caregiver. Initially we thought
Brandon’s behavior changes were a sign of frustration due to the extended power
outages in our area. Then came a sudden onset of 103 degree fever with
increasing agitation. We immediately took him to the ER for assessment which
revealed an ear infection and kidney stone. Shortly after arriving he ... Read
Full Story

Submit Your StoryView More Stories


STEVEN WATKINS

Survivor, Survivor, Survivor

This is my journey of 37-days in hospital with Sepsis. August to September 2023
It must have all started for me when I got a sore neck and shoulders, about one
week before I ended up in hospital. I went to our medical and injury centre
since I could not see my GP for at least another week, and after waiting for
about three hours finally got to see a doctor. However, they only sent me home
to do some neck exercises…. no blood tests… otherwise they would have found what
was really happening with me. What ended up being ... Read Full Story

Submit Your StoryView More Stories


SARAH COWLES

Survivor, Survivor, Survivor, Tribute

Sarah started her February 16, Friday morning babysitting her youngest grandson
for a few hours while my sister had to work. She noticed her stomach was upset a
little bit throughout the day. She was familiar with stomach issues and took
medication to help with nausea. She was living with diabetes, kidney disease, a
blood clotting disorder, and more. She managed well for a 58-year-old woman and
joked about her owning her own pharmacy. That afternoon, we decided  to order a
pizza since there was a snow storm. By 7pm when it arrived, she suddenly started
to vomit very harshly ... Read Full Story

Submit Your StoryView More Stories


DEBORAH WALLER

Survivor, Survivor, Survivor, Tribute, Tribute

My mother passed away on April 30th, 2024 after 48-hour battle in the hospital
with sepsis. My mother started complaining of abdominal pain on April 27th in
the afternoon after we went out to lunch. Shortly after we returned home from
running errands and grabbing lunch at Kerby’s Coney Island, my mother started
vomiting on and off until later in the evening. Initially, she thought, she may
have gotten food poisoning. Shortly after midnight on April 28th, my mother
passed out getting up to go to the bathroom. She was extremely pale and had no
strength to get up. I ... Read Full Story

Submit Your StoryView More Stories
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